01.30.13

What we’ve learned:

Heart: Hannah’s heart is ok. She does have a small hole where blood flows from one side to the other, but it is not a concern. Many people are born with this, and while most of these cases close themselves, even if it doesn’t, she shouldn’t need a surgery to fix it.

Lungs: Hannah has a small spot of lung disease on one of her lungs. It is ‘mild’ but could pose potential risks if it gets worse. Thus, we head back to Mayo on the 7^th to have a Nissen band constructed around the top of Hannah’s stomach. The doctor will take the top part of her stomach, wrap it around the top of her stomach, and staple it to itself. This is the best option to stop reflux from coming up into Hannah’s esophagus and leaking into her lungs. It should be a quick and not to painful recovery for her and we are hoping to be back home over the weekend.

Kidneys: With Cri-du-chat Syndrome, kidney function is sometimes compromised. Hannah’s abdominal ultrasound looks good, and her kidneys were fine.

Vision: The pediatric ophthalmologist agrees that the structures of Hannah’s eyes are fine, but she may have a bit of delay in developing her ability to see well close up. She may need glasses, but they will retest her in a few months.

Physical Strength: Hannah will develop slowly. She is getting stronger every day and we pump her full of therapy to help maximize her growth. I was looking at a blog from a mom of a 5p minus child, and she had posted her daughters milestones. Child to child, there is much variance, but as a base, her daughter could sit alone at over a year, said her first words at over two years, and walked alone at over four years. She does note that now the problem is keeping up with her!

Cognitive Development: The greatest indicator to Hannah’s future is based on the size of the piece missing on her fifth chromosome set. Hers is large. It would also be based on the duplication on the tenth set, which is also large. The bigger, the worse it effects a child. Hannah will probably not be able to live alone and will deal with at least a moderate, more probably a severe, mental handicap.

Weight: Hannah’s growing is great. Thanks to the G-tube, she gets all she needs and is finally ready to move into a size two diaper! Thanks to her cousins, she is more than ready to move into her stylish wardrobe:)

What we know:

Hannah is beautiful. She is perfect in her own way. I am so thankful that Hannah was sent to us, she is a blessing that God has given our family.  Every first she has will mean more and be more special than we could have ever imagined. Eli loves Hannah, and her smiles when he gives her Eskimo kisses tell me that she already knows and loves him.

We will have our hardest days with Hannah. My greatest fear is the day that we will no longer be able to take care of Hannah the way she will need to be cared for. Right now though, she is all ours-every smile, every laugh, every lesson of patience, acceptance, faith and true love.

01.24.13

Short and quick before I get off to work this morning...

Hannah's PH Probe showed readings high enough during feedings that she needs to have a band placed around the top of her stomach. They will wait for her to get over this darn cold and have surgery on Feb. 7th. It should be a relatively quick recovery.

For now we are home sweet home with Will and Eli...and Eli has been very happy to see his "beauful" (beautiful) little sister:)

01.22.13

It's freezing cold outside. Hannah looks like a snowman in her little bundle suit:)

As expected, Hannah failed her sleep study. During the consult today, the doctor suggested that she use an oxygen machine when she is sleeping. She also wanted a blood draw to test Hannah's iron count as it can contribute to how often she's kicking her legs at night. She slept through the abdominal ultrasound and we should know the results of that and her PH Probe tomorrow. We are a bit anxious to hear about the possible reflux- crossing our fingers that there will not be a surgery.

We have one more day filled with appointments, but if we are lucky, we will be heading home tomorrow night:)

01.21.13

Today was a day of waiting. We checked in this morning for Hannah's biopsy and PH Probe placement. The look at her lungs showed what the pulmonary doctor had previously thought- that there is a bit of lung disease in the spot he saw on the CT scan. What they did learn is that they believe the spot is relatively new or at least an ongoing problem, so Hannah will be cut off from any oral feedings at this point. 

Tomorrow the PH Probe will be pulled and data will be collected to see what if any reflux is happening, and based on the outcome, we will decide where to go next. No reflux means no surgery, and our fingers are crossed!

Unfortunately, Hannah is a bit of an escape artist and because of this, she has to wear 'no-nos,' arm cuffs that prevent her from moving or bending her arms and whipping out her nose tube. She's not happy about it, but she's still cute:)

01.20.13

A quiet day today. Hannah didn't realize that it was Sunday and that we didn't have appointments today, so she was up early to welcome the morning...

We relaxed most of the day and just enjoyed being together. Mom made fried chicken and mashed potatoes and gravy for lunch and the BEST chocolate chip cookies for my three desserts. Eli spent time playing in the kid's room here and we all got to enjoy a visit with Christine, our friend that lives in town. Eli was especially happy to get another day with his little sister.

Tomorrow morning we report for Hannah's appointment to have a better look at her lungs. While she's asleep, they will also place a PH Probe and begin to monitor any reflux for the following 24 hours (we will stay overnight for this one, too). Our fingers are crossed for no signs of reflux and no additional testing!

A big thank you to all who have sent well wishes and prayers our way. We are so very grateful for the support and generous love we are blessed with.

01.19.13

Just a quick update to share tonight. Last night Hannah had her sleep study, but it didn't go well. The air in the room was really dry and it made it hard for me to breathe right, and even worse for Hannah. I didn't think that her sleep last night was a very good representation of her normal routine sleeping. She was also covered in probes (about 10 on her head and another 10 placed around her face and body) and had a breathing tube set in her nose to monitor breathing difficulties. The nurse was in a lot to check on her and re-position any probes that weren't picking up enough signal, so there wasn't much sleep. Overall I am interested to find out if Hannah slept well enough and deep enough to get a good read on her sleep patterns.  

Today was spent with Will and Eli. We also moved into the Ronald McDonald House and used their free Rochester Children's Museum passes to take Eli out on the town. We also took him to the Ramada for an evening of swimming and pizza- though I think the pizza part pleased Will more than Eli...

We are looking forward to more family time tomorrow:)

Eli painted his own face at the Children's Museum...the next Picasso?

01.18.13

Another eventful day...This morning we met with the swallow study doctors to prep for the FEES study this afternoon. We then met with a physical medicine and rehabilitation to discuss Hannah meeting milestones and an overall discussion of her progress since she's left the hospital in November. It was encouraging to know that she is meeting her milestones, even if it is slow going. 

Our afternoon was spent with a sleep study consultation and the FEES study. The consultation went well. Despite Hannah's lasting cold symptoms, we are still going forward with the sleep study tonight. As far as the FEES swallow study- fail. Hannah did not appreciate the camera down her nose (I am on her side on this one...) and after only a few swallows they stopped the study. The doctor decided to halt all oral intake until we can determine feeding aspiration by a different means. So, while this means less barf on me, it is a concern that she will regress on the what progress she had made in her swallowing abilities. 

We are now back at our hotel for dinner and then we will head back downtown for tonight's sleep study. 

On a happy note... Hannah was all smiles today (except for the camera in her nose bit). She is a happy, beautiful little girl who knows just when a grin is needed to brighten spirits. The doctors who saw her during our last stay are happy to see her growth over the past month. And, last but not least, we are #4 on the Ronald McDonald waiting list and should have a new roof over our heads tomorrow evening:) 

Perfectly put by an amazing friend, "Praise God. Lay all of your troubles on Him."

01.17.13

Before anything, I have to give a big, no huge! thank you to everyone at Washington Elementary for the generous and thoughtful send off on Tuesday afternoon. How grateful I am to be blessed with such caring and big-hearted peers. Will and I are overwhelmed by the support we've been shown. 

In my best attempt to keep everyone updated, a blog seems the most effective and efficient way- let's hope that I can keep up:)

We arrived at Mayo late on Tuesday for Hannah's early appointment on Wednesday morning. We reported to St. Mary's for a chest CT. Hannah did have to be sedated for this in order to avoid wiggling and get a good picture of her lungs. 

Thursday was draining. We were stacked with appointments, the telling one being genetics. Hannah has a 5p deletion consistent with a diagnosis of cri-du-chat syndrome and a 10q duplication that contains approximately 45 known genes. The cri-du-chat syndrome can manifest with cognitive delays, less muscle tone and a smaller head (though her head is growing proportionally with her body and so far is on track for her growth chart line).  Hannah's swallowing and aspiration problems could be attributed to this. The duplication of chromosomes is a wild card, as there is less known about the effects of this chromosome set having an extra piece. Will and I will both be tested for the same disorders. It could be anomaly in Hannah or something that we passed down. One additional concern is organ function- especially the kidneys, so there is an ultrasound scheduled for Tuesday, as well as an Echo of her heart. 

The results of Hannah's CT scan of her lungs yesterday showed very mild bronchiectasis in one lung that could eventually cause serious and permanent damage. Monday through Monday night Hannah will have a PH probe (very similar to an NG tube) placed down her nose that will register any refluxing into her lungs.

The good news? Hannah was so happy to be out of our arms and her carseat, that the moment she was able to stretch out at the hotel, she rewarded us with great big belly laughs- her first- and more beautiful laughs have never been heard!